Visit with Eliana's surgeon yesterday

Just to update on Eliana's most recent medical appointment.  She was scheduled to meet with her surgeon one last time yesterday (Fri 4/27).  When we arrived we also found out that she was scheduled for blood work, a chest x-ray and an EKG.  Wish we had known that in advance so I could have given her some tylenol.  She didn't like the heel prick and cried and cried as they tried to get enough blood drawn.  The other two tests were easy and she didn't mind them at all.  Everything was fine with both the chest x-ray and EKG.

We had a good meeting with Dr. Jaggers.  He thinks she looks well and is healing well.  Her incision site looks good and her bones (sternum) are also healing well.  He said that often it is hard for bones to heal well because babies can be very wiggly  and pull the bones apart, though thankfully that hasn't happened with Eliana.  She is approved to be on her tummy and to have a bath.  We still need to be careful on how we hold her so as not to put stress on her chest (something that might pull on it like picking her up under her arms).

We asked some questions about her surgery and learned that her ASD (Atrial Septal Defect)  was larger than they thought prior to the surgery.  Instead of suturing it, he also used a patch on that hole.  The patch is made from a "gortex" material that is resistant to bacteria.  Her skin tissues will grow around it.  As he was explaining what he had to do to repair this hole, he was looking for paper.  I handed him my notebook and he drew a picture of her heart and where the holes were located.  Explaining how the ASD was under the septal leaflet of the valve.  (Sorry if this is too much technical info, though some will like it.)  He had to cut away the tendons (may not be the right word) that helped this valve to open and close to be able to get to this hole and repair it.

Dr. Jaggers seemed to like explaining all of this and I think it's neat to have the hand-drawn picture from one that has seen her heart.  Eliana's baby scrapbook is going to be filled with a lot of unusual things - whenever I have time to get back to that hobby.   

I'm going to go nap while the house is quiet and Eliana is sleeping.  She is feeling better, though still having some fussy times.  Yesterday about 5:30pm she started crying and wouldn't be settled.  I tried feeding her and she seemed hungry.  After swallowing though, she cried more.  Not sure if she is still having pain in her throat?  I tried a little longer to feed her, then stopped and focused on getting her settled.  She fell asleep and didn't wake until 7am this morning!  The day before yesterday we had a similar time only she fell asleep about 4 or 4:30 in the afternoon and slept until the next morning.

More later. 

Love,  Leslie

Photos and More

It's been a busy last 24 hours.  Last night, Roger's sister arrived to stay for a week and help us.  We are all thrilled to have Aunt Karen here!!!  She had a tough time getting here with cancellations and rerouted planes and we were glad to have her finally here!  She is a nurse with lots of experience.  She is a delight and we are thankful she is willing to be here for us.

Eliana had a great visit with her pediatrician on Tuesday.  Her weight is up again.  In fact, when plotted on the growth chart, she jumped up in the percentage points in the last week!  How amazing is that?!  Sweet baby girl really was using a lot of energy with her heart.  We aren't going back to the ped for a month!  A month!  Seems like a really long time when we've been there weekly or every other week for the last 4 months.  I hadn't really thought of this before, but I'm guessing that Eliana has been to the doctor more than all of my other children combined!  I'm so thankful for the excellent care she has received there!

Today we visited a feeding specialist.  She watched Eliana and tried to give me tips.  We tried changing some of the bottle pieces to help her out, but just need to keep working on it.  She is doing better, but still has a ways to go before we are getting rid of that feeding tube.  The feeding therapist did tell me that most of the cardiac babies are released with feeding tubes - it's a skill they have to learn/re-learn.

I had forgotten we were doing audiology today until we arrived there and I heard someone else mention it.  Oh yes, we are doing that too.  When Eliana was an infant, she passed the hearing screen in her right ear but not the left.  I even went back when she was a week old and had the test redone - same results.  We haven't followed up again until now - well, because we were really focused on her heart. 

They wanted her asleep for the test.  She cooperated by falling asleep during the meeting with the feeding therapist, but then woke up when they hooked up all of the electrodes onto her.  She wasn't fussy though - very still and quiet for an awake baby.  Even so, they couldn't get a reading with the first test or the second.  The third test also did not give a passing mark in her left ear, but did in her right.  As she is being tested I just keep praying for accurate results as I'm watching the screen wanting to see PASS!

The audiologist tried to be positive saying that it was great she has hearing in one ear as this is so important for communication.  He reminded me that because she has small ear passages, she may be more prone to ear infections and fluid build up.  He can't be sure that there is something wrong with the left ear, but she could have some hearing loss.  I listened and remained calm even though I just wanted to cry!  Rebecca was with me and I didn't want her upset.  Just before we left he did one more test and told us that her left eardrum wasn't really moving.  Later when I talked with Eliana's ped.  she said that this most likely indicated fluid.  I'm hoping and praying that is what is happening.

Do you remember me saying just a couple of days ago that I just wanted some time to be "normal" again?  To hold my baby and not worry about her heart and surgery.  This just surprised me today.  I wasn't prepared to think my baby might have hearing problems too.

On my way home, I called and set up an ENT appt for next Wed for Eliana.  Please pray that if there are problems, that the ENT will be able to detect them.   Of course, I'm also praying that there are no problems!  Praying that it is just fluid and that she has not suffered hearing loss.  Thank you for praying once again for our baby!

Before I rested this afternoon (I was able to take a nap thanks to Karen!!!), I talked some with God about all of this.  I asked Him about how she was "fearfully and wonderfully made" if she was having so many health troubles.  (Now I don't doubt for a minute that she both fearfully and wonderfully made - just not sure how the troubles fit into it.)  I felt God comforting me by saying that her soul is what He was talking about - not her earthly body.  Her soul is made in His very image!  Later I was reminded of a verse in which it tells us that God does not see the same way people see.  People look at the outside of a person, but the Lord looks at the heart.  Thank you God for encouraging my heart once again.  The heart.  That has been a huge lesson for me this year. 

OK, I've been promising photos and here they are in slideshow format.  I've been wanting to clean them up - or post them directly to the site, but haven't been able to.  I Will try to post some here if the link to the slideshow doesn't work.

***WARNING***  I don't think that these are as "bad" as the last slideshow.  However, you can see her incision on some of the photos.  If you have children watching, you might want to preview them.

Here's the first set.  Most are the day after surgery.   The thing on her head is an IV, covered with a little cup (I/2 of it) and her bow on top of that!  One with a man in blue scrubs is one of her anesthesiologists.   I tried to label the pictures, but not sure how that will work.  I'm not sure if the link will work or if you'll have to cut and paste.  Let me know if it doesn't work.

http://s176.photobucket.com/albums/w187/rogernelsen/4-17-07/?action=view&current=1177429633.pbw

Second set - This is two days post-op.  Fewer cords, no IV, etc.   The man holding her when she is fussing is Dr. Jaggers, her surgeon.  Sorry for the weird effects of my striped shirt.

http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-18-07/?action=view&current=1176954299.pbw

Final Day.  The first picture is Eliana's cardiologist, Dr. Carboni.  Pictures at the end are of Duke Hospital.

http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-19-07/?action=view&current=1177227073.pbw

Tomorrow is Eliana's follow-up appointment with her surgeon.  Please pray for wisdom in knowing questions that we should ask.  I want to find out all that we need to know as I don't think we'll have the opportunity again to meet with Dr. Jaggers.

I'm worn out and am hoping to go to sleep soon.  Eliana was up late last night, most of the day and has been asleep since late afternoon.  I'm hoping she'll still be able to sleep through the night.

Thank you for your prayers for us.

With love

Leslie                                                                        

Wholehearted Bracelets Update

Thanks for being patient with me in waiting for an update.  Things have been busy around here! 

Rebecca attended a Special Needs Conference near our home on Saturday.  She was invited by a friend (thank you Tami)to share her vendor booth space and was looking forward to the opportunity.  We had anticipated Eliana still being in the hospital at that time and thus arranged for a friend to take her to the conference.  When I ended up being home with Eliana, Rebecca wanted my company/support there, but was happy to have friends go with her instead (thank you Catherine and Hannah).  Did I mention that Rebecca can be a little on the shy side?

While at the conference, $285 make that $295 (I just counted the $) worth of bracelets were sold!  Rebecca  also spoke with a father there who has a child with heart problems.  He was interested in her charity and wanted to know if she might be interested in expanding.  I'm not sure that we could expand in our current format, though the idea does have appeal. 

For now, our family - and most especially Rebecca - has spent many, many hours on this ministry.  We have been thankful for the times when friends have helped.  The day to day filling of orders, making bracelets and selling them has fallen to a tender-hearted 11yo girl though.  Quite an undertaking!!!  She has sold over $2500 in the last month and a half!  We would never have been able to do this without the support and interest of friends - and the wonderful "word-of-mouth" advertising she has received.

Rebecca received a sweet note last week from the daughter of one of my on-line friends.  The mom and daughter were both touched by what Rebecca is doing and the 7yo daughter has decided to make and sell bracelets for Rebecca and donate the money to her cause!  She also donated $10 of her own money.  (Thank you Michelle and Amy!)  Oh, the tender hearts of children are so sweet!  What an example to me of compassion and love!

Rebecca still has a good inventory left and is planning to visit several places in the next week as well as finish off some special orders.  Tomorrow we will be going to Duke for an appointment for Eliana with a feeding specialist.  Afterwards we will be meeting with a nurse that works on the adult cardiac floor.  She was given one of Rebecca's bracelets by her husband (who works with Roger) and has been taking orders for Rebecca!  Isn't that neat?!

It's been hard to know how exactly to market this - and manage it as a business.  This is not something we have done before and honestly I never expected it to grow this big!  I do think it's a great idea, a wonderful way to help other children and a fabulous learning opportunity for all of us.  We have seen God's blessing on her venture and have been thankful for the distraction that it offered our family during an incredibly stressful time!

Today Rebecca and I are planning to visit a local craft store (chain) to see if they might be interested in donating anything to her ministry.  When we began this project, we decided to fund her supplies so that ALL of the money in sales would go towards her cause.  We have received support from friends and thought that some area businesses might be interested in helping too.  We'll see.  A big step for my girl who is learning to work through her shyness.

I need to go update the numbers for her sales.  Her total is currently $2704.00!  Correction here too - $2714!  Her dreaming big goal of $5000 is looking more managable all the time! 

Will try to post more later about yesterday's  pediatrician appointment - and the pictures too.

Love,

Leslie

Changes in the Last Week

Has it been a week already?  So much seems like a blur.  I was reading back over some of my entries on the day of her surgery and was surprised that some of the details I didn't recall - like how I held on to her little bow.  I'm glad to have this wriiten record. 

I have noticed some changes over the last week.

• Less sweating - my poor child was always warm.  When I'd hold her in my lap, my legs would end up wet where her head had been.


• Her heart used to pound - really pound!  I could lay my hand on her chest and feel her heart working so hard!  This has been the most striking change to me.


• Crying - more of this.  She hardly cried at all before.  Sometimes recently she would fuss to be fed - but not usually.  Now she has cried in pain more than I care to experience.  It is so hard to see and hear her fuss as it just isn't something she has done in the past.


• Weight - She is looking chubbier - though maybe it's just my imagination.  We visit the pediatrician today and I'm curious to see what she has gained.


• Eating - Twice she has taken 3 ounces since surgery.  This hasn't happened since January!  I'm hopeful that she will pick up quickly on this, but at the same time not wanting to push her on this.


• Sleep - She sleeps a LOT less than she used to!  She wakes more easily to noise too.  Thankfully she is still able to fall asleep pretty easily - and often on her own.  Something none of my other children did at a young age.

Some things haven't changed - like her smile!  When I had heard that some babies lose skills, I really hoped that this wouldn't be true for her.  I hated to think of missing her smile.  It just lights up her whole face.  I'm so thankful for her smile! 

Some more numbers for you.

Countless - The prayers offered up and answered on behalf of my daughter and our family. 

105 - Ml or cc's per feeding.  That's 3.5 ounces.  Enough to sustain her weight, though will probably have to go up soon.  We will have to see how her body is handling excess fluid (one of her meds).

97 - Highest amount she has eaten via bottle since surgery - and that was the DAY AFTER surgery!!!  She did 90 today and I was thrilled!

7 - Number of feedings per day.  Every three hours - and blissfully still skipping the 3am one!  Eliana eats at 3, 6, 9 and 12 around the clock. 

3 - Number of medical appointments Eliana has this week.  One with the pediatrician, one with a feeding specialist and one with her surgeon.

2 - Number of medications Eliana is currently taking.  This does not include tylenol.  She is on lasix and oxycodone.

2 - Number of holes that are repaired!!!  Just the other night a friend's child commented on the holes in Eliana's heart.  Rebecca said "She doesn't have holes in her heart any longer!"  Oh, how sweet to hear those words!

1 - Precious little girl that is already impacting the world! 

I had planned to post yesterday/last night on how much better things were with Eliana's pain.  I had cut back on her pain meds and she was doing great ... until about 9:20pm.  She cried hard for about 10 to 15 minutes before falling asleep.  Then she woke about 10:50pm and cried for an hour.  She was gassy and fussy.  I did finally get her setttled (not sure if the mylicon helped or she was just worn out!).  Sweet baby slept the rest of the night.

Still working on the photos.  The slideshow is looking weird due to the striped shirt I was wearing one of the days.  I'll try to get it fixed today.  (Or I'll see if my dh or oldest son or sweet friend can fix it as I really don't know how.)

Thank you for praying and for caring about these details. 

Love to you all,

Leslie

Less than a week ago ...

we were still facing the giant.  Open heart surgery for our baby girl!  I was waiting to be plummeted into anguish and despair.  I had been forewarned and completely understood that overwhelming fear - but thankfully it didn't come.  Oh, I was afraid, but I was also given the gift of God's peace.  I have to believe that this was the answer to many, many people praying for our family.  First though I had to walk through a hard place with Him.  I'm not saying He wouldn't have given me  peace without doing this.  I don't know.

I had to come to a place where I could say to God that no matter what the outcome, that I knew that He is good.  I had to be willing to place my little girl in His hands.  He had her anyway - maybe it was just that I had to be willing to let go.  It was completely out of my control!  Completely. 

I heard someone say that facing surgery made the story of Abraham and Isaac come alive for them.  That has never been a story that I really liked or understood.  The willing sacrifice of your own child?  How could you do that?  I didn't know if I could if put in Abraham's place.  It's really about trust.  It's about knowing who is in control.  It's about knowing that God loves my child more than I ever will.  I had to realize all of this.  All of the statistics and risks that we had to hear - and then sign a form saying that we understood them - twice.  When I handed over our precious Eliana, I imagined handing her to God.  He blessed us by having a man that took her tenderly ... lovingly ... and cradled her in his own arms.  And then he thanked me!  This was such a tender moment for me that pierced my heart.  My God loves me so very much!

I have been overwhelmed with the many people, literally thousands that have prayed for our daughter and our family.  People that have responded with love to the story of our family.  Family, friends and complete strangers that have cared enough to pray for us!  It brings me to tears just to think how much people care.  What a blessing my aching heart has needed.

Why am I feeling sad now?  I sometimes wonder if I'll always cry so often.  I haven't been a "teary" person in the past, but I'm certain I've shed tears daily since Eliana's birth and many days a flood of them.  Tears for many reasons - sadness, fear, pain and also joy, compassion and love. 

It's late and I'm tired.  I'm running on not enough sleep for far too many months now.  My parents left this morning after being here for a week.  I'm so thankful that they were able to be here with us - supporting us, loving us and caring for us physically and emotionally.  My daughter Rebecca was hit with sadness tonight too.  I just held her as she fell asleep.  I feel like my heart has been put through the wringer.  I hope that it is a better, more compassionate one now for having endured this pain.

I am blessed by your words to me.  It amazes me that my words - the raw emotion of all that has gone on in our lives - could be a blessing to someone else.  I ponder on how good God is and am amazed that He would choose to use me.  Who am I that He would do that?  I am thankful and humbled.  I have often talked with God about what I'm feeling.  I've asked Him to use all of this to change me.  I told Him that I thought it would be a real shame to walk through this heartache and emerge unchanged.  I want Him to mold me to be more like Him. 

I have figured out how to respond to posts, but wasn't sure if just answering in a new post was easier?  Wasn't sure if it would be easy for people to scroll back to comments to see answers?  Anyway I thought I'd answer some here.

Eliana is taking Lasix twice a day.  This is a diuretic which helps her to eliminate the excess fluids in her body.  She has been on this since late January to help manage the fluid in her lungs as a result of the holes in her heart.  She is no longer taking digoxin.  Digoxin is a medicine that made her heart pump harder to try to help the blood get to the right place instead of shunting through her holes.  (Due to the holes in her heart, sometimes the oxygen rich blood would be sent back to the lungs instead of out to the body or the oxygen poor blood would be sent out to the body instead of to her lungs.)

I tried giving tylenol through her feeding tube, but it seems too thick to flush due to the tiny size of her tubing.  I tried using extra amounts of water, but it didn't seem to work too well.  I didn't want to give it and have most of it just sit in her tube.  So far, it's worked alright today to alternate and just give that to her when she is awake.  She is awake so much more now!

Eliana's hiccups come on suddenly and I have no idea why.  They also end suddenly and without cause (or so it seems to me).  She has gotten these since before she was born.  They have never really bothered her in the past.  I think it's just hard on a chest that is already sore right now.  Today when she got them in the afternoon I was talking with a friend.  She prayed for my sweet girl and they went away quickly.  It's so sweet when an answer comes swiftly.

Eliana is trying to feed orally - but it's not going so great.  I've been working on trying to manage her pain the last couple of days and not willing to push her on eating.  She seems to be feeling better and with that I'll feel more comfortable in trying more feeds with the bottle.  For now, I try when she is awake for about 15 minutes or until she shows me that she is not interested any longer.  We are scheduled to meet with a feeding therapist on Thursday.  I'm hoping that as she feels better that she'll be able to eat!  I look forward to the day that we won't have to use the feeding tube!

Eliana's feeding is through and I should probably go to sleep.  Morning always seems to come so quickly.

Praying for you who are reading that you would know God's love in a very real way today!

With love,

Leslie

Better day - Sat 4/21

Dear Friends,

Thank you for your posts, note of encouragment and prayers!!!  I wish I could respond to each one of you to let you know how very much your words and prayers mean to me!  Better yet, I'd love to give you a hug!  I feel so very blessed to be a part of the body of Christ - in a way that I have never experienced in my life.  This is a sweet balm to my soul.  I thank God for each one of you - those that post, those that pray, those that have taken an interest in my precious daughter and our family.  Your words of support in having her in our home instead of the hospital are very encouraging.  Your prayers for her - and our family are much appreciated!  I am continually overwhelmed by all of the love we have received over the last 4 months. 

Today has been better for Eliana.  She was smiling, "talking" and even once tried to laugh!  Oh, have I  mentioned how very thankful I am that these are skills that she didn't "lose" and have to relearn! 

This morning, I began giving her meds every 4 hours - alternating tylenol with the stronger med.  The only difficulty is that the tylenol needs to be given orally and I can't do it when she is sleeping.  The other med I give through her feeding tube which is really nice as it definitely all goes in and it doesn't matter if she is awake or not. 

She has only had one bad crying spell today and that was  tonight around 9pm.  I fixed her a bottle of pumped milk.  The consistency is a little thinner than what she has been getting.  She swallowed and began gaggin on it - a lot.  I think it hurt her or seemed like it went down the wrong way and she started crying and crying.  I wanted to give her some "good stuff" to help her system better manage with the narcotics she is taking.  Poor baby!!!  It's hard to comfort her as I feel I have to be careful with how I hold her so as not to cause more pain with any bouncing or moving of her chest/ribs.  I often just cry and pray as I sing to her or speak softly to her.

One of the songs that I've been singing to her a lot this week is one that Joshua (7) made up just last week.  It's sung to the tune of "Rubber Ducky"

Eliana, you're the one!

You make life so much fun.

I love you and you love me.

But, bet of all we're family.

Isn't that sweet?  She seems to like being sung to.

She has also been getting hiccups - something she did even in utero.  They have never seemed to bother her, until now.  Now they hurt her chest.  I can see it in her sweet face.  Thankfully she doesn't seem to keep them for a long time, but there is nothing I know of to do to help stop them!

Please continue to pray for her pain - and for wisdom in how much of her meds to give her.  Please pray that we would hold her in a way that doesn't hurt her.  Please pray that she wouldn't get hiccups for a while.  Please pray that her recovery would be smooth and swift.

I praise God for all of the good He has done in healing my little girl and bringing her home!!!

With love,

Leslie

New prayer request for Eliana

Midnight - Thur 4/19 

This seems small compared to the other things I've asked prayer for - but my little girl has been miserable.  She has spent much of the evening off and on fussy and gassy.  I probably should choose another word - she is crying.  I hate to see her in pain - after all that she has been through in the last several days.  And of course this would start when we are at home.  I've been holding her, rocking her and trying to comfort her (off and on) for many hours tonight.  I'm thankful I'm able to do that!

She has been unable or not interested in eating from the bottle since 6am.  :-(  For this reason I don't think it's the feeding or taking in air.  She is on the same formula as before so I don't know if this is a result of something with her surgery?  I'm planning to phone one of the doctors in the morning if things aren't better.  I hesitate to give her anything without "approval" from a doctor given her heart surgery and the fact that she is on other meds.  KWIM? 

I gave her some pain meds (prescrip from hospital) and she is currently sleeping well.  I'm praying for a good night's sleep for both of us.  We haven't gotten much this week.  Please pray that we would figure this out so she isn't hurting.  It is not like her to cry and cry and it hurts my mama's heart.

I'll update more as I can.  Feeding is going to be a big issue for us.  I'm hoping we'll get it figured out soon so that we can say good-bye to her feeding tube!

Praising God for His goodness.  We are glad to be home!

Update  10:15am Friday 4/20

She slept fine through the night.  Woke at 8am fine.  By 9am (feeding time) she began to cry and cry.  Cried hard for 30 minutes!     I gave her pain med at 9am and I'm guessing it kicked in by 9:30am. 

Called her ped and we are going in at 1pm.  Please pray for my baby.  She is not herself and having her cry like this just hurts my heart - not to mention it is a little frightening after what she has just gone through.

Thank you!

 With love,

Leslie

 Update 4pm Friday

Thank you for your prayers, advice and encouragment!  I love you all!  :group:

We went to see her ped who checked her out thoroughly and feels that her crying was due to pain.  :cry:  Oh, that makes me feel so badly!  :cry:  I've heard so much about how they are trying to wean her from the strong meds and onto Tylenol only.  For now, we are going back to the strong meds and weaning a little more slowly. 

Eliana just sobbed and sobbed - both last night (and I did give her the strong med then) and this morning.  Please pray that I would have wisdom in giving her meds and in cutting back when it is appropriate.  I hate to think of her hurting. 

As an interesting note, our pediatrician called Eliana's cardiologist who told her that he was surprised that she was released so quickly.  I commented that I didn't like hearing that she shouldn't have been released.  The ped. corrected me saying he didn't say she shouldn't be released only that he was surprised that she was released so quickly.  I asked why he allowed it and was told that it wasn't his decision.   *sigh*  I really don't want my daughter in the midst of any politics and am trusting that this really was best for her.  We've had so many positive things occur this week and am believing that this was for the best too.

Our ped. did say that the upside to being home is that Eliana is not exposed to any germs/diseases/infections that she might be there at the hospital.  Believing that perhaps this is why she is home.  I'm also close enough to go in if needed.  And her care at this point is also something that I can handle.  I've learning a lot more about nursing/critical care than I ever imagined - though not so much that I don't worry and that I have all of the answers! 

Thank you for your prayers.  Please continue to pray for Eliana's recovery and that she would have no complications.

Thank you!Love,
Leslie

Thur 4/19 - We are going home!!!

It's 3 days post-op and we are going home!  It's hard to believe how quickly and well she is recovering!  Truly a miracle.  I had been told 2 weeks and was really prepared for 1 week based on discussions with other people who had been through this.  Never did I expect to be home in 3 days.  Just three days ago at this time (12:30pm) I was running into the NICU to see my precious daughter for the first time after surgery.  Oh, how I had missed her during those hours of surgery.  Oh, how hard it was to let go of my little girl - to know what was happening to her and not to let me mind dwell on it too much. 

I don't remember if I shared my fears - that she wouldn't make it.  That something bad would happen to her.  That any of the time I had "wasted" would be time I would really regret if I wouldn't get time back with her.  I was prepared for the day prior to surgery - and especially the night - to be a time of pure anguish.  I was not prepared for God's peace to cover me.  I did still cry, but not the anguish and desparation that I expected.  God is good to have covered me in peace.  I am so very thankful for that.  It didn't take away the fears, but did give me a peace in the midst of the hardest thing I've ever done.

We've seen LOTS of people this morning.  Many doctors, nurses, several therapists and more.  All think Eliana is doing great.  So many comment on how cute she is - how sweet her smile is - and what a precious little baby we have.

I feel like I've been in "crisis" mode for all of the last 4 months.  It's been a hard place to live for what has seemed a very long time.  I've missed just being able to treat her like a baby.  Just to enjoy her without worrying about how or when I was doing specific things or counting hours, minutes or volumes.  I have a notebook journaling every thing that has gone into Eliana - everything!  It's been a lot to keep up with and a means of keeping me "on my toes" and not relaxed.

Yesterday I talked with my pediatrician and she mentioned that now I needed to get started on the other things - therapies and such - that have taken a back seat while we dealt with cardiac issues.  I told her that I wasn't quite ready for that.  I just want some time to have a baby.  I just want her to be a baby.  Not a baby in heart failure. 

I shared this with one of the nurse practitioner and she encouraged me to do that.  Just let her be a baby for a short time - and then to get started.  Of course, I've since seen 2 therapists who encourage much more immediate action.  I'm sure that I'd feel guilty not doing anything too.

I'm not really sure what to do now.  What is my next step?  I know that the next couple of months that I'll still have to keep a close eye on Eliana and her care.  Hopefully more and more things will normalize - or get to a normal for us.   I know that recovery will still be a challenge, but hopefully without all of the worry.  Feeding is our next big hurdle. 

I am so thankful for your prayers and encouragment.  I would ask you to continue to pray as you feel led - while Eliana is in recovery and beyond.  I'm a little nervous and feeling like I'm stepping out into the unknown.  Nobody ever said parenting was easy, but the rewards are without measure!

We do have more photos.  I'll see if some are ready to post before we leave the hospital.  Eliana is finishing up her tube feeding and then we are going home!!!  Thank you for walking this with us, for caring about us, for praying for us and for wanting to be a part of our lives. 

With love,

Leslie

Wed April 18 - 2 days post op

Wow! Another busy, busy day! Thank you to those of you that have been praying for our precious daughter! I am going to try to recap our day and remember the highlights of all that has happened. My heart is continually boosted by the outpouring of care and love for my little girl. She seems to draw people’s hearts to her which I love to see.

The blood draw did not happen in the middle of the night, though I was awakened about 4:30 by Eliana crying. I was VERY surprised as I don’t remember her waking up at this time ever. Maybe as a newborn? Definitely not in the last 3 months.

I picked her up and tried to console her. She was just crying. The nurse came in shortly after that with meds. I was surprised, but she said she had been taking her vitals and obviously awakened her. Once awake, it was clear she was in pain. Poor little honey!

I went to sleep after getting her settled. Woke again about 6am when the nurse had come in to feed Eliana. She had asked last night if I wanted her to do one of the feeds and I thought this one would be great! She had her laying in the crib taking her bottle. I told her that I usually held her more upright, but she was doing it this way to give her more chin and cheek support. Fell back to sleep and was awakened shortly after 7am when a cardiac fellow was making rounds. He told me we would be seeing Dr. Jaggers (her surgeon) later that morning.

Eliana started to fuss again. (This was shortly after the ending of her tube feeding.) She had a bm which I changed and then she spit up a LOT! I tried to hold her upright to help her get cleared and also suctioned her mouth. She was really having a hard time. She then fussed and fussed. It wasn’t time for her meds yet and I wasn’t sure if she was in pain or not. I held her, rocked her and sang to her. One of the nurses came in to check her vitals and commented on the condition of her arm. I told her she was scheduled for more bloodwork and she immediately said that she was going to pray for her! I told her that many, many were praying for our little girl and it had made a world of difference.

During this time the gal doing the bloodwork came in. I asked her if she had been warned about Eliana being a hard stick. She hadn’t. I told her that she had many, many sticks (today I counted 11 in just one side of her groin!). When she said that she was just doing a heel prick, I told her that the techs had difficulty with that too. She warmed her foot and then had a great stick! Her heel bled freely even! Thank you for this answer to prayer!

Several of the doctors made rounds and spoke with me. Eliana is doing well and they hoped to remove some of her monitors today.

Roger came up this morning. I am glad he was able to be here today when there is a lot going on and a lot of information being shared.

Just about 9am someone arrived for Eliana’s chest x-ray. It was time for a feeding, but we decided to wait on it. I sat in a wheelchair holding Eliana while we were wheeled to the lab. She did fine - again - with this procedure and didn’t mind it at all!

When it was over, the lab tech told us that she should not be fed via tube until it was inserted another couple of inches! Yikes! The bottom of the tube is in the stomach, but the side ports are feeding into her esophagus. This could likely have been why she spit up and why she was so gassy. I’m so glad that we found this out here! It also helps explain the troubles one nurse had in finding the signs for correct placement. She thought it wasn’t in and that we would need to redo it. When we got back to the room, the nurse took off the tape and pushed the tube in further.

I took a short nap in the morning and was awakened when Dr Jaggers came in. He mentioned that this was a personal visit. (I love that they do this!) He removed her bandages and said she looks great. He said she could wear clothing and didn’t need any special care for her wound. We are scheduled to see him again next Friday. He also commented that Eliana was a favorite in the ICU. (It touches my mama’s heart when I hear that others love, enjoy and appreciate my little girl!) We took a photo of Dr. Jaggers with Eliana. He tells us that we should be home by the week-end! Probably tomorrow (Thur) or Friday. Truly amazing! I can’t believe how quickly she is healing from open-heart surgery!

Now it is time for another sedated echo. She is asleep at this point and we are again wheeled up to the lab. She wakes while there. She is given the choryl hydrate sedative and does much better with it this time. We talk with the 3 nurse/lab tech in there and ask a lot of questions. We are able to see the patches on her heart! Isn’t that amazing! It looks like there are 2 patches on each of the holes. I even have an u/s picture. Not nearly as cute the typical u/s picture, but still pretty neat!

One of the gals comments on how that though Dr Jaggers is a man of few words that he is one of the most compassionate men she has even known. It is clear in the specialty he has chosen that he cares greatly for children. I loved hearing this about him as we really haven’t had any time to get to know him. The echo is good! There is some regurgitation from the valve that had to be cut to repair one of the holes. This is not a concern and hopefully will just improve with time. She will continue to have echos over time to monitor this and the other repairs. The repairs on the holes look great! No portions of holes remaining or leaking there at all! Praise God!

Our sweet baby girl is finally really sleeping. She has had a long and busy morning. She waits awhile for her next feeding due to the sedation meds. She doesn’t wake for it and we don’t try to wake her. She is still sleeping peacefully in her bed.

One of her the echo techs today asked if it was good to be on this side of surgery - most definitely YES!!! It is so much better on this side. I didn’t share how on Monday after we had handed Eliana over and gone to the waiting room I began to have chest pains. The pains were sharp and on my left side. I prayed for them to pass and tried not to succumb to the fear that went with them. All of the worries, doubts and “what ifs” that can plague your mind. When the fear is about one of your children - how very compounded it becomes. I’m not sure I can ever explain how very painful and difficult it has been to have my child struggle so much and to be in heart failure for months. Or the fears that she wouldn't make in on numerous occassions. 

I have been driven to my knees so many, many times - for my daughter as well as others who have walked or are walking on this path.  On the days leading up to surgery and especially on the day of surgery God’s peace which passes understanding was very real to us! I have never experienced His peace like this before.

I praise God for all that He has done - in my daughter, in the people He has placed in our path and in my own heart. I am so thankful to have more time with Eliana.  While this road has been so very hard - and still hopefully has many miles on it - I can now with tears of joy say that I am thankful to be walking on it.

With love,

Leslie

PS Thank you for all of your comments and prayers!  I sometimes wonder if I'm sharing more info than is helpful.  I know that it helps me to write it all out.  Hopefully more pictures to come later tonight.  I know that for me I am visual and seeing pictures helps to understand more than just words alone.  The seriousness of the surgery is so very obvious when you see her post op.  She is looking better each day though!  I LOVE seeing her smile!  It just lights up my world. 

Photos from day of surgery

I decided to try a new post for photos.  These are of the day of surgery.  Several of Eliana, one with the 2 anesthesiologists and the rest are post-op. 

*****WARNING******

Some of these photos are difficult!  Please view them prior to letting any children see them.  I remember well the first time I saw a photo of a child post-surgery it took my breathe away.  It was so hard to see - though perhaps for me it was because it was the future for my little girl.  Perhaps this will be easier knowing Eliana is doing so very very well!

The first 5 photos are pre-op.  The last pre-op photos is Eliana and I with the two anesthesiologists.  The one just following this picture shows her hooked up to a lot of things.  It was this one that I thought might be hard to see.

This is a slideshow and I'm hoping this link works.  If not, I'll try to fix it tomorrow.  (Let me know if it doesn't work.)

http://s176.photobucket.com/albums/w187/rogernelsen/?action=view¤t=1176814618.pbw

 Love,

Leslie